questions and answers

Earlier this evening I was messaging with a friend from college (Hi Erika!) and she had a few questions for me. I was very happy to answer them. But I started to think...if she had questions maybe others do to. I have had a lot happen over the last 6 years and I even get a little confused at times of what happened when. So here are a few questions and answers. I combined some I answered with her with some I am asked often.

What type of cancer do I have?
A sarcoma-specifically rhabdomyosarcoma. This is a type of tumor that affects the muscle. It is usually found in children and teenagers.

When and how was I diagnosed?
I was first diagnosed in March of 2003 with a grapefruit size tumor in my left buttock. I was 20 years old and a sophomore in college. I fell in October 2002 while playing football and shortly after noticed a small hard area of my bottom. The fall did not cause the cancer, it just brought my attention to this area. I went to 2 doctors, one for a few months for physical therapy. I finally went to a third doctor who did a biopsy. I received a phone call from my dad a week later with the results. It was soon discoed that the cancer had spread to my lungs.

How many times have I relapsed?
I have relapsed 4 times. I received chemo for a year after my initial diagnoses. I relapsed 6 months after I finished chemo in '04, then in '05, then in '07 and most recently in November 2008. The first 3 relapses were small spots in my lung and they were removed with surgery. I have not have a recurrences to my buttock or any where besides the lung. The most recent one was the size of a small softball and attached to my heart. Surgery was not an option at first so I had to start chemo again.

Why does it keep returning to my lung?
I don't know exactly why but sarcomas like the lungs, this is where they typically spread to.

Why do I keep relapsing?
Cells from the original tumor broke off and traveled to my lungs. Some appeared early (the spots on my lungs when I was diagnosed). Some were not "set off" until later (relapses). I'm not sure what made some show up earlier, or what turns them on/off. I am hopeful that the chemo is killing of anymore that remain hidden.

Why doesn't the CT scan show these cells?
The ct scan can not show single cells. It shows masses/tumors

How were the surgeries done and do I have any side effects from them?
To remove the tumors in the lung, an incision was made in between my ribs to get to my lungs. Yes, it is as painful as it sounds. I have had 1 on the left side and 3 on the right. Since the tumor in my buttock was so large, a lot of tissue and muscle had to be taken with it. I had a lot of physical therapy and used a walker and crutches for a while. It was unknown if I would be able to walk without a cane but after 8 weeks I was limping along with out one. Since so much tissue was taken, I have a very noticeable scar and disfigurement of my left buttock. This is why I never wear swimsuits. I wear a "butt pad" that was made for me at a place that make prosthetic arms/legs. It helps give me a curve so my pants fit better and it keeps me comfortable when I'm sitting. I pick pants that work well with the pad, so for the most part, no one can tell anything is different

How does chemo make me feel?
During the week of chemo I am very tired. I feel like my head is in a foggy cloud, I get headaches, I have trouble thinking and concentrating. I am not able to safely drive, a family friend takes me to chemo. I am nauseous, but I have medicine that keeps me from vomiting . I am usually not in the best mood. I sometimes get mouth sores but I get a medication that makes them not as severe. I have hot flashes and night sweats. Chemo also causes a bad taste in the mouth, kind of metallic, I imagine like sucking on a penny. This makes food taste terrible.

It is much better now then the treatment 6 years ago. They did not have some of the nausea medications they do now. I vomited several times a day and always felt faint. I was also on a type of chemotherapy that caused numbness in my hands and feet, making me clumsy and unable to do things like button my shirt. I was started on that chemo this time but only had two rounds because the effects were happening again. My hands and feet are feeling better.

How do I get the chemo?
I get it through and IV in my chest. Some chemo are in pill form but all of mine is IV.

How do I feel physically?
I am fatigued but I can get myself where I need to go and take care of myself. I usually need at least a short nap during the day. I am not working now. My job is too physical-i'm a nurse-the shifts are too long and the risk for infection is too high. I am usually comfortable but I do sometimes have pain. My chest feels much better since the tumor shrank. I have pain medication to take if I need it.

How do I feel emotionally?
Depends on the day. Some days I am very content, my outlook is positive and I go about my day. Some days I'm so sad it physically hurts, i cry a lot and the smallest thing will set me off. I went through a break up during the early months of chemo. chemo+break up is as bad as it sounds. It's been a hard 6 months and sometimes it just catches up with me. I know days will get better....

Since I'm not working, what do I do all day?
I read blogs, read books, sleep, watch movies/tv. When I feel up to it I talk on the phone, clean, scrapbook, craft, sometimes I cook. When my counts are up I see friends. I do get bored but I've had to learn to entertain myself.

If anyone has anymore questions just ask.